We are home now so glade. Evan is doing so much better now. He don't like the bag on his side. But he has to have it so see if this will keep his penis open. His breathing is good and he looks good he is Evan now. I'm so happy. He got up this morning and eat. I love it. All i can say is GOD IS GOOD.I have to keep him up in his high chair or hold him to day because he wont's to pull the tube out.
Thanks for the prayers.

UVA Surgery Update

Mandy again--posting for Christina. She just called and Evan is out of surgery. They had a hard time waking him up, and his oxygen and heartrate were both low. He's awake now though, had something to drink and is resting in a room. They decided to keep him overnight for observations since he had a hard time waking up. The scope on his penis showed it was clear inside, so the dr's think its mainly the tip that keeps growing closed. They put in a catheter and want him to keep it in a few days, while giving Christina cream to put around it in hopes it keeps the skin from closing up onto the catheter tube. Lot's of prayers are needed for this little guy and his mom too, they definately can use all of them!!

Evan walking
I love it

Evan is having surgery tomorrow. I hope this helps him.

EVAN IS WALKING

Evan is doing good walking I'm so glade. He is having surgery on Wednesday. They are going to open his hole on his penis. So he can pee, better. I hope it works. He needs it he has been having problems for so long. Evan is still not eat like he should. I wish his blood work would come back soon. Maybe it will tell us something. The GI doctor that he see is good. He said he will help him.

We had a good Christmas Evan was in a good mood he was feeling good. My kids got so much stuff this. Thanks for everyone helping me. Evan is getting better, he still has a cough. He isn't eating that good at all.
He did take off walking to day. I about to fall in the floor.

Christmas of 2009

We went to see the Pediatric Urology at UVA Tuesday. He was so nice he said that is going to do what he can do to help Evan pee with out pain. He is going to talk to the doctors in Cincinnati about what he wont's to do for him. Evan is suppose to have surgery in January on his penis, I'm so glade. But it is so scary to put him to sleep, but we have to do it. Evan still is having problems going to the bathroom. I called UVA to day about Evan. Evan hole closed up again and the Urology hear had to open it up again. He just did this two weeks ago today. When they do the surgery i hope it helps.
Evan still not eating like he should but what you do. He goes to the GI doctor Monday. Evan hasn't lost know weight.
I have some good picture of Evan i just cant get them on the computer. I don't know what wrong with the computer. Its probley just me.

Hello everyone we are ready for Christmas. We got our Christmas pictures taking yesterday, they will be in next week so i will put them on here. I hope my computer let's me, and i have a lot of picture to show everyone. Evan likes the tree he like to hit it so i had to put all the ornament's up high so he cant get them. We went and seen Santa today he didn't like Santa at all. We did get a picture but Evan was screaming.

Evan is still having a hard time peeing. We go back to the Urology Tuesday. I don't know what they going to do. But someone is going to do something I'm getting really upset because he is in some pain, and know one is doing nothing for him. I'm calling Cincinnati tomorrow and see what they say. He is in a lot of pain he is getting new blister and they wont heal at all, he don't wont to eat, he wont take his milk so I'm getting really scared now. So mommy going to get someone to do something for my son this week. If he don't eat he don't get his calories that he needs. So we are suppose to see the GI doctor Tuesday and we had to change it because he has to see the Urology Tuesday, so next Monday he see the GI doctor. So maybe they can do something for him. We got his labs back this week and his iron is still low i don't know why he take two kinds of Iron, and his Vitamin D is low. Now he take a Vitamin D supplements. All i do is give him medicate no wonder he wont eat.
He hasn't walk know more this week i guess he has been in to much pain with his penis. His legs haven't been that strong this week. But that's okay he don't need to walk because Mommy like to hold him.
I will try to get some picture of him if i cant get my computer to work.

I had to take Evan back to the Urology again today. He is still having problems going to the bathroom they said it is burring him to go. I told them that we need to do something for him to keep some of the pain down. So the Urology but the tube in his penis. I don't know if we should have done it or not, but we had to do something he has to keep the bladder empty. so when we got home i was changing his outfit and diaper he pulled the tube out. I was freaking out, didn't know what to do. SO i called the doctor and he told me to keep it out and see what he does in couple hours. SO i did he did go to the bathroom but he cryed so bad i know it hurt him, they said it would. So we didn't but the tube back in, he is still crying when he goes. Now i just don't know what to do for him. Now he is getting a fever and i don't know why that is either. So i will be call his doctor tomorrow to fine out why he has a fever. If its not one thing it's hundred. I just wish he would get better. It suck to see your child in pain all the time. He is getting alot of new blister on him now to. He still not eating he hasn't had nothing to eat in two day, he is drinking his milk.

Today i had to take Evan to the Urology he could not go to the bathroom. So he had to open his penis, if it happens again i have to do it everyday so it will stay open. I hate to do that but i guess i have to. He has to empty is bladder, or that will cause problems. So today he isn't feel the best.
He has not eating to day he hasn't had nothing to eat today he just wont eat. He is drink some milk so that's good.
Evan is having alot of sores on him now, he has one that just wont heal. I would think it's getting cold outside he wouldn't have so many sores on him. His toes are really bad again i cant get them to heal at all. I wish i could find some way to keep them heal. Every time he hits them they bleed. He just don't feel good today, he is laying around to day doing nothing. So we need to say a prayer for him to night.
When you see your son in pain what do you do, Evan is looking at me and he just cry and you cant do nothing for him. He is in so much pain. He is having a hard time going to the bathroom.
It is bad when he plays and his skin tears or when he is playing he hurts his self, and bleeds. It just so sad to see your son like this.

My mommy has a birthday tomorrow

Evan took his first step. I'm so happy.

Evan is doing good. He is having trouble again going to the bathroom his penis is closing again, so he is feeling bad. So I'm going to take him to the doctor tomorrow. He is eating okay. I think his stomach is hurting him, he has gas so bad.
Evan makes me so happy, I just didn't think he would do what he does now. This illness that he has isn't stopping him from nothing. He is a fighter.
I wont to put some pictures of him trying to walk but my computer wont let me.
We are going to see Santa Clause this weekend i hope he will set on his lap, but i know he wont.